Hi all...thanks so very much for all the wonderful input & info to my previous posts. I finally just got a clinical diagnosis last week, after fighting this thing for 20 years. It has been a long road, and needless to say I have spent the last few months 'RE- Seeing' everything in my entire life. It's been a tremendous load to deal with and accept, tho I am thrilled to be on the right path. I begin treatment in a week or so and am trying to prepare the best ways I know how. My question to you all is how anybody handles all this in relationships. I moved to NJ to be with my long distance sweetie jut 5 months ago. We found out what's been happening to me is Lyme just afterwards. The last few months have been stress HELL. Our life has become something entirely different than planned and it's really scary. I am going through SO much and he can only 'hear' some of it... and I think can really understand even less. It's causing such hardness and often heartache for me... I'm scared and wondering if it's all worth it. Any words of advice or experience would be much appreciated. thanks, Heather
Posted by missing (Member # 22437) on :
It's really tough at first.
We've been married for 22 years and it almost caused us to divorce.
We also looked back at all the "weird and strange" episodes I had in my life and realized it all was from Lyme.
Being re-infected 2 years ago and dealing with co-infections really affected our relationship.
It took a year, and now we are in our regular old groove again.
We have adjusted to our Lymelife and also know it won't last forever.
We actually use humor to deal with the issues. He has Lyme too, so we never really know who is the confused and forgetful one at any given moment.
It is kinda funny though, because I think he has said something, and he thinks he said something completely different. So half the time we walk around having no clue what is going on!
We just laugh about it.
I think it is tougher for guys to accept when they have it. They don't want to be a wimp.
And it is tough for guys to see us go through this because they feel helpless to help us through it.
Some doctor's think it can be sexually transmitted so we haven't had intercourse for a long time. I am not sure if that is how he got sick with Lyme.
I was misdiagnosed for 2 years and we were having sex during that time. I could see my poor husband getting sicker and sicker. Now he is nearly as sick as I am, with some identicle symptoms.
So we are just not willing to risk it.
Make sure you have friends and family to support the both of you throught this.
Posted by Misfit (Member # 26270) on :
I'm not exactly clear on what you mean by if it's all "worth it". Treatment? Your relationship?
It IS hard on a relationship, no doubt. And men want to fix whatever's broken, and this is something they can't fix. They can just support you the best way they can.
My DH knew I had issues when we met. At the time, it was just severe back problems. Then Lyme hit.
And he's tremendously supportive, but he really doesn't understand totally. They can't, not really.
I just try to not talk about Lyme all the time. And believe me, in the beginning that was hard to do. It's easy to get so engrossed in what we've learned and we want to share. Because a lot of what we learn is pretty incredible.
But when I'm going through a rough patch, he doesn't need me to point it out...it shows. I've just told him that the majority of it all is something that *I* have to do myself, and if I need something I will ask for his help.
I know I'm no help here, but just know that so many here have dealt with Lyme in their relationships and survived to tell it. (the relationship, that is)
My DH told me once that he didn't let anything else run him off, he sure wasn't about to let this do it. He says he's tougher than Lyme.
Gotta love him.
Posted by hoo331 (Member # 28399) on :
Missing~ thanks...humor is a HUGE part. I'm sure I've misplaced a bunch of mine lately!
Misfit~ Thank you too. I did mean the relationship, if it's worth it. My honey is really supportive too..and I guess I'm learning that he can't totally understand and trying to accept that. I'm def. in the beginning learning phase with so much coming up constantly and and decisions I have to make all the time. I'm sure I talk about it too much right now. My family thinks I should go home to be with them, but treatment is MUCH harder there...yet I feel like I am ruining his life. So many even daily ups and downs can wear out anyone. Someone not used to relationship and massively unprepared to deal with something like this... well, it makes it all the harder.I am very much wanting to to counseling... it's just a matter of being able to afford it with everything else. I love it here...feel like this is where I am 'supposed to be' but my heart aches all the time for what I can't change and from the arguing & fighting. I just wish I could let go of the worry that we can't handle the strain.
Posted by METALLlC BLUE (Member # 6628) on :
Relationships are hard enough sometimes, but throw in Lyme Disease and it's an overwhelming, panic-attacking inducing, stressful train wreck.
Depending on how serious the symptoms are and whether the individual(s) have debilitating psychiatric symptoms caused by the infection; this can be the difference between a tolerable relationship and a nightmare.
I face the psychiatric symptoms a lot and just being inside my own head is tough, but I cope by trying to avoid people when I feel that way. I try to lose myself in books, or sleep, or whatever I'm capable of doing at that time. I don't want to say something I'll regret, nor expose them to rapid mood changes, aggression, irritability, etc -- but often they come knocking and keep poking me with a stick, even after being told to stay clear for awhile.
Then when I attack, they suddenly look at me like I'm the monster, as if I didn't warn them in advance that I couldn't control some of the symptoms such as negative moods, anger, and sadness, etc.
Then I feel like an ******* because they guilt me into believing I somehow did "them" wrong.
That's often how relationships work. It takes someone very understanding and someone who isn't completely ****in' stupid, to be in a relationship with someone who is debilitated by Lyme physically and mentally.
People who listen to me don't expect me to be anything other than where I am -- which is sick. When I ask for quiet, they give me quiet, when I'm burned out, they let me heal. When I need to be alone, they leave me alone.
When they "don't" listen to me -- that's when things explode.
Posted by Misfit (Member # 26270) on :
Let him be the decider as to whether or not you're ruining his life. Don't try to make that decision for him. YOU might feel you are, HE might feel totally different.
There will be people that can't handle dealing with a loved one with Lyme. Men AND women. But we have to be the ones to let them decide what they can and can't handle in life.
I've only been with my DH for 7 years. It was this last feb. that Lyme slammed me, and I got my dx. So we're new to this, too.
As Mettalic Blue said..there are times when you need quiet, he needs to give you quiet. When you're burned out, he needs to let you heal. And when you need to be alone, he needs to let you have the alone time.
And arguing isn't helping YOU or the relationship. People with Lyme need to avoid stress like the plague. It's really hard to avoid stress when family dynamics are involved..but you really had to make sure that it happens.
But, don't make his decisions for him. Be the best partner on the days when you're feeling good, and allow him to help you on the days when you're not.
Posted by Tammy N. (Member # 26835) on :
You're in a tough spot. There is a lot of evidence to suggest that it is contagious thru intimate contact. He needs to know this.
I think physical intimacy is an important part of a relationship (along with lots of other types of intimacy, talking, communicating, etc.). My husband and I both have Lyme and Cos so we have full relations. But we often wonder, did I give it to him or did he give it to me.... We're kind of glad we don't know. I think we both brought various viruses and bacterias into the picture, then they all got mixed together and landed us in the tough situation.
Another thought - have your boyfriend watch the film "Under Our Skin" so he can really begin the understand the hugeness of this epidemic.